Bethany
Dx 6/2008, PASC
R.I.P. 1/27/82 – 2/3/2011
My story began in November 2006 when I was showering and all of a sudden felt a grape-sized lump in my breast! I was 24 years old and figured I was too young for cancer but was terrified when I felt the lump. I went to my primary care doctor who also happened to be an oncologist–he said it was just a benign mass or cyst but that I could get an ultrasound to be sure. The ultrasound report described the mass as “normal dense tissue.” Over the next year and a half the lump continued to grow and I went to my doctor several more times and he continued to say it was a fibroadenoma or some other benign mass that many women in their 20′s get. In May 2008 I decided to see a naturopathic doctor to see if there was something I could do to get rid of this lump (the size of a lemon at this point) or if it could be caused by a hormone imbalance, etc. She did several blood tests and everything came back normal. She suggested I get another ultrasound. This time, the ultrasound showed a “suspicious” mass about 5cm in size and a biopsy was recommended. When I went for a biopsy, the surgeon said the mass needed to be removed given the size and that it could continue to grow. On June 6, 2008 I had the lump removed and the surgeon told my family he was 99% sure that the tumor was benign but that it would be sent to the Mayo Clinic for pathology. Well, five days later I get the call – “hi Bethany, it’s Dr. Petrucci, I have some disturbing news–the tumor is actually malignant. The type of cancer is called angiosarcoma….
So, the next step was to have a mastectomy, which I did at the University of Michigan since most my family is in Michigan. The doctors there also recommended radiation and chemo. I decided to get a 2nd opinion at Dana Farber Cancer Institute in Boston since it is known as one of the top cancer hospitals in the country, particularly for sarcomas. They recommended no chemo or radiation at this time since I was clear of disease and the statistics haven’t shown any survival benefit for people who do chemo vs. those who don’t. I decided to “first do no harm” and went with their recommendation.
After close to 10 months cancer-free, a routine CT scan showed that the cancer was back–it was now in my sternum bone and in my lungs. The recommendation now was to do chemo and radiation. I started with radiation because the tumor in my sternum had begun causing excruciating pain. After the radiation I had another scan and there was now a grapefruit-sized tumor on my ovary! We scheduled surgery with a top sarcoma surgeon at Cedars-Sinai in L.A. to remove it. Three days before the scheduled surgery, the tumor decided to rupture–I passed out and my mom called an ambulance which quickly came and took me to the hospital. I ended up getting emergency surgery that Friday night at the Scripps Hospital in Encinitas, CA. The surgeons successfully removed the tumor, my ovary, and my omentum, but they said there were hundreds of pieces of the tumor throughout my abdominal cavity that they couldn’t do anything about, but that hopefully chemo could keep them from growing. Most of them didn’t take off and grow, but the next scan did show a tumor on my liver as well as one on my remaining ovary. I started chemo in August 2009 and have had 10 rounds of Doxorubicin (which worked at shrinking the tumors for about 8 months, then they began growing again), 3 treatments of Taxol (did not work at all–the tumors grew as if the Taxol was fertilizer!!), and now I am getting Vinorelbine and also taking an oral drug called Nexavar. The current treatment seems to be working but I will know more once I have my next CT scan in a few weeks.
I feel fortunate to be alive almost 2.5 years past my diagnosis, and 4 years since I first felt the lump, given the fact that I was told by doctors that my angiosarcoma was one of the most aggressive they’d ever seen. Since my diagnosis I have changed my diet, started taking supplements, and do complementary therapies like acupuncture when I have the opportunity. I feel these things really help and will be key in healing my body from angiosarcoma